Chronic severe nocturnal hypnic headaches

I bet you saw Dr. Goldstein. I went to him for over 30 years. He is quite an unusual man. He fired me about 5 years ago because I was his only private patient left in his practice. He only does testing for big pharma now and I didn't want to be part of his test groups. I will say he diagnosed my husband's Cerebral Angioma when he had symptoms and I didn't know where else to bring him. He is since in the care of UCSF neuro dept.

I found the old post and will paste it here. I hope your doctor feels it’s worth a try. It was such a desperate time and I hate that anyone suffers from these awful headaches. :

lisalucier – I started the Prednisone taper on 11 December. 42 tabs 10mg. I'll complete dosing on 22 December. Prior to starting the Prednisone I think the other meds had thrown off the timing of the headaches, so rather than waking me at a specific time, they were more random and not quite as severe, but was feeling generally achy along with a constant feeling of shakiness. I have tolerated Prednisone pretty well in the past, when taken for extreme cases of poison ivy and a lengthy battle with hives following a surgery. This round, after day 2, the headaches completely ceased and I've felt much better with the exception of the shakiness, a little fluid retention and elevated blood pressure. I expect the fluid retention and blood pressure will return to normal after I complete the dosage and, if true to form, I expect a week or 2 of feeling generally lousy while my body takes back over to produce cortisol.

After completing the dosage, I remember waking with a headache once more, a few weeks later, but not as severe. They haven’t returned since. Mine were always left side of head and mind blowing severe. Caffeine helped with the pain but no other pain meds helped at all. I wish you success🙏

thank for the reply , how long did you take the prednisone for your hypnic headaches ? and since that round they havent returned? how long were you dealing with that type of headache? Thank you. Me too started with waking up at a specific time but then became more of a chronic form not as quite severe...

It’s been a while (thankfully) but I remember waking with the first one in September and didn’t happen again for a few nights but after a couple of weeks they hit every night between 2 and 3am. I had noticed the severity would decline after 6am (when I’d get a cup of coffee) but didn’t make the caffeine association until I found this support group. I was shocked that heavy hitter prescription pain meds did not help at all but caffeine provided some relief. The problem, on top of the pain, was the lack of sleep, which caffeine didn’t help. I began to dread going to bed since I knew what was coming. This went on for 4 months and several different medications after ruling out the life threatening possibilities with MRI’s and CAT scans. So, fortunately my Neurologist thought to hit it with Prednisone after trying several other meds that many others on this site had tried. I think it was 10 days or so of the prednisone where you start with a higher dose and gradually taper off. Within a couple of days the timing of the headaches was disrupted and only had one more headache after finishing the meds. My neurologist was Meredith Snapp in Charlotte, NC. My thoughts and prayers for you and all who suffer with these terrible headaches.

I am glad he helped your husband with a difficult diagnosis and hope your husband is getting excellent care at UCSF. I was not going to mention the Headache Specialists name but you nailed it. After driving to San Fran monthly to visit him for six months, he was able to discern that my headache was inflammatory, severe, and occurred at exactly the same four intervals every night. I had brought diaries each of those six visits and telling him EVERY night its the same, living h--l. At month six when he said "if this new combo does work we'll try something else next time." I told him there would not be a next time because I could no longer live like that, and put my husband through it. He actually then took a look at my diaries, and had an A-ha moment, saying "EXACTLY the same time every night! I think we can actually make this headache go away with ONE pill (indomethacin). " He said it was called a rare "Alarm Clock headache." I googled ACH and read everything that was published about them--they were also called Hypnic Headaches. Treating it and migraines have been totally separate endeavers. I hope you find some relief for your headaches, and I hope the prices of CGRPs comes down when/if generic versions can become available. Eli Lilly offers a discount card for Emgality, and they now offer home delivery. It helped prevent my migraines very well, but was still more expensive for me than Ajovy being covered by my insurer. I am not promoting it, but noticed their manufacturer is making an effort to help patients with the discount program and with direct delivery.

When I awoke with my usual headache last night I went downstairs and made myself a cup of coffee full caffeine. The headache went away. I've tried doing that before bed but it didn't work for me. Do any of you take caffeine pills instead of black coffee. I wonder is it's better for your gut as I have gastritis.

Hi Cheryl!

If you google "hypnic headaches" and read many of the summary articles by research physicians, you might see case reports of people not being able to lie down with them, since lying down can make the pain severe. That is my case also. Once awakened by them, I bolt out of bed and pace for hours upright. Before I used preventatives, I would become exhausted (usually about 3 hours of pacing, when no acute meds were helping). I would then sit on the floor with my back pushed tight (upright) against the wall. Sleeping on a propped wedge did not help me, but your idea of nearing standing while sleeping is amazing! and Clever!

I am so glad you are getting relief from caffeine. I met a Vietnam Veteran who had terrible headaches, and his only help was to drink coffee on and off all day. The VA system did not diagnose his headaches as hypnic, and offered little treatment; but he figured out that he felt better walking all day, rarely sitting or lying down. Very sad.

I do hope that caffeine continues to help prevent your headaches, and that your siblings will also get some much needed assessment and treatment options. The literature on migraines sadly relays that undertreated migraine can lead to stroke, and also to brain lesions. I do believe my own hypnic headaches stem from brain trauma due to under-treatment of migraines, for years. Every case may be different. I'm so hopeful that research on Hypnic headaches and Migraines will lead to more effective, well-tolerated treatments that are not terribly expensive.

Thank you for your well-wishes! I have not met another person that has hypnic headaches, and though we are not positive that yours are, it is really wonderful to connect with you and hear about your creative solutions to treatment! If I find other solutions, I will let you know. I am now taking a class in Qi Dong and finding it very relaxing--it's a bit like Tai Chi, but more about the breathing and healing component. Time will tell!

Taterjoy